I feel like I should start this blog with a “Previously on #Periodically…” but it might just be easier to read Periodically 10, 11 and 12 if you’re new. If you (understandably) can’t be bothered, here’s the gist: in August I had laparoscopic surgery to look for endometriosis, they found nothing but a regular (functional/ovulation) cyst on my right ovary and said there was “no gynaecological cause of pain”. While my belly button took some recovery meanders, I readied myself for my first doctors appointment since moving back to Essex and to look beyond gynaecology (towards bowels and bladder) to find a cause for my pelvic pain. Since then I’ve processed the news and the language issues I was worrying about in Articulating Pain – saying “dementors” instead of pelvic pain has stuck pretty firmly in my vocabulary.
I must confess, trying to find the words to articulate how confused I am at the moment is proving difficult. Every time I process one fact, something contradicts it and I’m in a new hole of confusion and disillusion. So bear with me.
October started with September’s late period and a whole load of nauseating, black-out pain. And it really surprised me. I was surprised because by linguistically and medically disassociating my pain from my menstrual cycle, I think I thought the gynaecological symptoms would disassociate themselves too. Foolish, of course, but that period was a bit of a wake up call.
Before my first GP appointment I had my symptom spiel ready, I’d checked that my discharge letter from Swansea had transferred and I was ready to start the process once again. Dr C, my new GP, listened to my symptoms, felt my abdomen, read the “no gynaecological cause of pain” letter, then turned to me and said “I am not convinced”. Excuse me? “I am not convinced that it is not gynaecological. You don’t experience painful periods or painful sex unless there is a gynaecological problem”. He ordered an ultrasound and some blood tests and said he would refer me to a gynaecologist.
I was pissed off. I’d been jokingly forecasting that the doctor was going to refer me to a gyane in this appointment for weeks but I had been joking. I was mad, and my general attitude was “it has taken me 12 months to get to where I am now (which is nowhere) and now we’re going to start all over again from the same place”. Basically, I sulked for a fortnight. Until…
This week, I headed to the ultrasound with my mum, confused as to why they hadn’t told me to drink a litre of water like last time. The reason I didn’t need any water was because it happened to be an internal ultrasound. Now they had my attention – I’d be moaning for months that it seemed strange to me that I’d never had one of these. While Dr T, who carried out the ultrasound, and the chaperone described the device as a “wet tampon”, I would describe it as a very solid USB dildo that’s plugged into a computer being watched by two doctors and your mum. To my surprise, it hurt almost as much as sex and has left me in the same horrible post-sex pain, but perhaps we now know why.
I can’t believe I’m writing this. I have a cyst! Two actually, on my right ovary. Yep, what the fuck? Sorry I can’t be more eloquent about this but I am so beyond confused and conflicted at this point that the words in sentence putting is falling out of nick. (What?) One is a small 2cm functional cyst – potentially an ovulation cyst but where I was in my cycle would suggest otherwise. The other cyst however is over 4cm and looks like an hemorrhagic cyst, meaning it has been bled into, which is, get this, potentially an endometrioma or endometrioid cyst. Hmm, those words sound familiar, don’t they?
Once I had my nickers back on my mum and I expressed our shock upon this discovery to Dr T, explaining the fruitless laparoscopy results just two months earlier. Dr T said: “what and the laparoscopy didn’t find any endometriosis? That’s funny because all your symptoms point towards that”. We all laughed and I went home with the promise that we’ll check to see if the cyst is still there and whether it has grown in six weeks.
I say laugh but I mean a sort of hysterical confusion and shock induced gurgle. Now, to answer some question my friends have hit me with since the Great Cyst Discovery of October ’17:
What does this mean? I don’t know.
Why didn’t they find it in the surgery? I don’t know. It’s possible that it wasn’t there, or that cysts have come and gone and during the lap things just happened to be clear.
Is this PCOS? I don’t know.
Is this endometriosis? I don’t know.
Will they take it out? I don’t know – seems unlikely given my favourite sentence “sometimes you just have to live with it” was uttered during this appointment.
If they do, would you want to go through surgery (belly button nightmares) all over again? I don’t know.
Did they actually do anything in the laparoscopy or did they just cut you open, have a cup of tea and then stitch you up (badly)? Maybe. No. A lot of my frustration earlier this week was directed at the surgeons in Swansea, but I know that’s unfair. They knew what they were doing, things must’ve been clear in August. Or maybe the functional cyst they saw was not as functional as they thought.
I don’t know whether to be mad, happy or upset – I am just very confused. I guess I can say “ovulation pain” rather than “dementors with knives” again now? Plus there’s the fact the whiplash might continue if in six weeks the cyst has disappeared without a trace. I almost begin to get that fuzzy “I’m not imagining it all!” feeling, before I begin to wonder if I imagined the whole surgery in the first place.
So things are once again painfully up in the air, but for now I am just grateful that despite my obvious doubt, Dr C listened to his gut.
A bit lost? Don’t blame you. Find the rest of the #Periodically blogs here. Or if it’s a little too TMI for you, I blog about books too here and, finally, last week’s blog can be found here.